High price for drinking when pregnant

Christchurch midwife Susan Parker with her foetal alcohol syndrome-damaged nine-year-old niece Anneliese in 2008.

Families and caregivers struggling to cope with young people affected by foetal alcohol spectrum disorder (FASD) gathered in Whangarei recently to learn more about the disorder, to share their experiences and call for help.

FASD refers to the range of disabilities that can occur when a developing foetus is exposed to alcohol during pregnancy. More than 200 people attending the workshops to learn more about the special needs of its victims, from both clinical and caregiver perspectives.

Many caregivers expressed frustration that FASD was not recognised in its own right as a disability warranting financial support. The hui heard that even when FASD was professionally diagnosed, which it seldom was, a young person would typically also have to be diagnosed with another intellectual problem to be eligible for disability-related support.

Experts and caregivers also voiced concerns that many agencies they dealt with had not been trained in how to respond to young people they suspected of having FASD.

FASD Centre Aotearoa clinical director Dr Valerie McGinn, who has had disabled children within her own family, spoke of how alcohol affected foetal development, and discussed research into New Zealand's particularly high rates of women drinking while pregnant (resulting in up to 3000 children born with FASD every year).

Consuming alcohol during pregnancy could result in brain damage, as well as health and behavioural issues that could persist for life. Many would need lifetime support just to cope with everyday tasks, she said.

Hui organiser and Northland DHB health promotion adviser Dave Hookway said services to assess children suspected of having FASD had increased in Northland in recent years. If a paediatrician's diagnosis wasn't clear, children would be referred to the multi-disciplinary Complex Development Assessment Clinic.

Northland DHB Child Health Centre clinical team leader Karen Faber said that while FASD was not specifically recognised as a disability eligible for financial support, diagnostic teams were currently absorbing comprehensive assessments within their existing funding allocation, bringing increasing pressure to bear on service delivery by Child Health Services and the Child and Adolescent Mental Health and Addiction Service Te Roopu Kimiora.

Diagnostic services were hopeful that FASD would be recognised as a disability, entitling parents/caregivers to financial support, and that extra funding would be provided for diagnostic and intervention services.

Paul Gyde spoke of his experience as a parent of a child with FASD.

"We were continually frustrated that while our son showed he'd learned something one day, the next day we would be back to square one and have to teach him all over again," he said. "In the end we realised that we had to adapt our behaviours as parents, since our son was not able to learn from the consequences of his actions. Practically it meant starting from the strengths our son had and building from there."

Many carers spoke about the consequences of their young people being suggestible due to FASD, including crime and substance abuse.

"Our son Jakob is alert, witty, creative and loveable some days. Other days he is abusive, self-harming, wandering the streets and at high risk of crime," said Claire Gyde, who chairs the FASD Care Action Network.

"We lived in a state of anxious high alert, as we didn't know what was going to happen each day with our son," Ms Gyde added.

Many caregivers also spoke about their children being excluded from the education system, often because the school did not understand the persistent nature of their brain damage.

"These children might be 13 on the outside, but practically they could be equivalent to a much younger child in terms of functioning," Mr Hookway said. Parents or caregivers of children suspected of having FASD were encouraged to discuss the possibility with their GP, public health nurse or teacher, who should refer them for assessment.

There was light at the end of the tunnel for those caring for FASD kids, Mr and Mrs Gyde said. They would need help throughout their lives, but could learn to participate in society and lead more fulfilling lives.

¦For more information go to the website www.fasd-can.org.nz